Monthly Archives: July 2011

Why are so many breast cancer advocates headed to Orlando during August?

What on earth would inspire us to head to Orlando, Florida during the first week of August?  The draw is certainly not the weather (though truth be told the rest of the country has turned into Orlando in August, maybe Orlando will actually be pleasant…).  No, the draw is the breast cancer scientific meeting known to best engage and include advocates – the DOD Breast Cancer Research Program’s (BCRP) Era of Hope conference, held August 2-5 in Orlando this year.

The DOD BCRP is a collaboration between the military, scientific, medical, and breast cancer survivor and advocacy communities to develop and carry out research to end breast cancer.  It was established as the result of the National Breast Cancer Coalition’s 1992 campaign to dramatically increase federal funding specifically targeted to breast cancer research.  The BCRP  is the only federal  research program that involves consumer advocates at all levels of review and planning, including peer review, programmatic review, and conference planning.  Advocacy efforts of NBCC members over the years have ensured that the program continues, and over $2.5 billion in research grants have been awarded to date.

The purpose of the Era of Hope is to give a platform for all results from DOD-funded research, whether positive or negative, to be reported to the public.  Every two to three years, researchers who receive funds from the Program must present their results at this public meeting.  The Era of Hope program is designed by a Technical Planning Committee that includes scientists and consumers.

“This is the meeting where advocates will hold the scientific community accountable and ensure that they know our goal has always been to end breast cancer. We will not celebrate small discoveries at this meeting.  Advocates will be collaborating with the scientific community in order to help end breast cancer. The DOD BCRP is the only federally funded program where scientists and advocates collaborate in such a meaningful way,” according to Joy Simha, one of five advocates on the 18-member 2011 Planning Committee.

The 2011 agenda looks full and interesting.  This is my first Era of Hope meeting, and I’m looking forward to hearing all of the reports from the scientists, and for the opportunity to challenge and question, and to collaborate on defining the best next steps that will help us meet Breast Cancer Deadline 2020.

Pink Fatigue and Advocacy

Add disillusioned breast cancer survivors and the power of social media together and you have a storm brewing against the mother of all cause marketing – pink ribbons and breast cancer.  Liz Szabo of USA Today writes this week about the power of breast cancer bloggers and how they are catching the attention of the largest breast cancer group – Susan G. Komen for the Cure®.

Pink ribbon marketing may be a victim of its own success.  It has worked so well that every company and organization wants to be a part of it, creating some questionable alliances that are now attracting the bloggers’ attention.  I wrote about one in my own blog.  What is startling to me is that breast cancer cause marketing has expanded to new levels, and not just in October anymore.  This past weekend I walked into Jersey Mike’s to be bombarded with pink banners and posters.  Mikes’ Way to the Cure….oh my.  Jersey Mike’s has created a six month, cause marketing plan with three phases!  The first phase gives me the opportunity to buy specially branded breast cancer collectible cups.  Wow.

But the real issue for me? Where’s the Progress?  Attention to the disease isn’t necessarily a bad thing.  And people wanting to contribute to the end of the disease in some way is certainly not a bad thing.  As someone who has had the disease and as an advocate, I appreciate the focus and attention on breast cancer, and people’s good intentions.  But, bottom line? I want to see results for all of this attention.  Something is going terribly wrong when so much attention has led to such dismal improvements (read NBCC’s progress report here).

What has gone so terribly wrong?  There are several answers, and there has been much already written about our failure to win the 40 year war on cancer….but for breast cancer a major problem seems to me to be the misguided focus on early detection as the primary solution.

Kudos to the many breast cancer bloggers who are questioning this status quo in the breast cancer world – pinkribbonblues, thecancerculturechronicles, chemobabe, uneasypink, accidental amazon, and regrounding, to name a few.  This groundswell of disenchantment is amazing and encouraging to me.  Getting people’s attention and questioning the status quo are the first necessary steps in bringing real change, according to Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change.

The next step is presenting an alternative.

  “Individuals and organizations must do the hard work of becoming ready to question the status quo, and be smart enough to present well-founded alternatives,” according to the authors.

What is the alternative for breast cancer?  Advocates with the National Breast Cancer Coalition (NBCC) argue that we need to turn the focus and attention away from early detection as the answer and instead focus on prevention of the disease and on understanding metastasis.  We won’t stop deaths from breast cancer without knowing how to prevent the disease or without understanding how and why the disease spreads.  Period.

I am hopeful that we can all work together to challenge the breast cancer status quo, change the conversation, present smart alternatives and bring real change for women and men with or at risk of breast cancer and their families.